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Heart Rate Monitor Pacing Survey – Results

In October we presented "an international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome."


The survey was initiated by Kathryn Dickinson from the Facebook Group “ME/CFS pacing with a HR monitor #2” and the HRM4Pacing Admin Team were instrumental with the questionnaire design.

The aim of the study was to explore the experiences of and attitudes towards pacing with a heart rate monitor in people with ME.


We can’t thank the patient community enough as we received 515 responses within just 3 weeks – a fantastic engagement! We were able to provide some of the raw data to the NICE roundtable discussion as evidence of other management options outside of GET/CBT.


There were some really helpful responses collected.


What stood out for us was the call for physiotherapists to have more knowledge about using heart rate monitors to pace activity, so that they could support patients who were new to the technique.

We’d like to do more about this, but as a starting point there are resources and presentations on our webpage which are suitable for physiotherapists and people with ME to explore.


Physios for ME really enjoyed working with ME patient experts and we would be happy to help other people with ME develop their own research ideas. If you’d like to discuss this, please feel free to get in touch.


The study team will be writing up the results and hopefully present them at some conferences next year, but in the meantime we wanted to share a brief overview of some of the results from the survey:




Demographics

87% of respondents were female

Age range: 17%: 19 – 34 year olds

49%: 35 – 50 year olds 32%: 51 – 70 year olds


Time since ME diagnosis: 20%: 0-4 years 26%: 5-9 years 28%: 10-20 years 26%: >20 years

Geographic location:

55%: UK (inc NI) 19%: Europe 0.2%: Asia 0.2%: Africa

9%: Australia & Oceania 11%: North America 5%: Canada 0.2%: C America


HR Monitor use Over 30 different types of monitor were reported


Time using a monitor:

51%: 0-1 yr 28%: 2-3 yrs 15%: 4 -5 yrs 6%: > 6 yrs


Ease of use:

16%: easy 33%: moderate 18%: hard 18%: difficult 5%: too difficult to continue 8%: too soon to say


Pros and Cons

Over 30 benefits were identified. The main benefits were:

Understand PEM triggers better (72%)

Real-time feedback on effects of current or prior activity (68%)


Over 30 negatives were identified. The main negatives were:

Financial (44%)

Initial restrictions by staying below the threshold (42%)


Benefits to using HR Monitors to pace


The survey asked: “Is there anything you can do since HRM Pacing that your illness had prevented you from doing before you started HRM Pacing?”


Over 30 aspects were identified. The main changes were:


  • Improved ability to do Activities of Daily Living or self care (32%)

  • Increased time with family and friends (23%)

  • Able to enjoy a hobby (23%)



Thank you again to everyone who got involved with the survey, and to Kathryn and her group for making it happen. We will update the website with links to the full write-up when it is published.

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